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The 'Sickness' in Society That Makes Chronic Illness Feel Shameful

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No one sees themselves getting older. It creeps up on you. Slow and constantly shifting, just as life is. Until eventually the world shifts from novelty to nostalgia. Becoming sick is much the same feeling. Suddenly I find myself 18 years into a diagnosis of fibromyalgia and realize I should say something about it. So, allow me to introduce you to my old friend, fibro, who I’ve widely kept away from the spotlight until this very moment. Fibromyalgia is a condition marked by widespread, constant pain and brain fog, impacting concentration and memory, and it gets worse over time. Even now, most of the time, would you believe, my 31-year-old mind has no idea how sick my body is.

It doesn’t just happen one morning, you see. There’s a first bout of symptoms to get through, then live with, then the next lot, then the next. What gradually occurs is limitless limitations. You’re left center of a diminishing window, and something in you still thinks you can break through its glass, but your body just isn’t up to it anymore. Fundamentally, what I’m getting at is that you may see a person struggling and feel sympathy for them. In their heads, they’re just the same as you, not in a cliche way, I mean literally. In short, they’re likely confused, not complimented by sympathy. Add to that, that fibromyalgia is one of many often invisible disabilities, and the plot thickens somewhat.

For me personally, the overriding thing about living with fibromyalgia has been a persistent chipping away at the very essence of who I am and what I stand for. That too, has brought beautiful things. Resilience, gratefulness, fearlessness, and a hunger to laugh and love a little harder top the list. This all adds up to legitimate, innate freedom, in total paradox to the increasing physical limitations. But, let’s have it right: Freedom rarely comes from anything but struggle.

There are more times than I wish to remember when my old friend fibro has stripped me bare, writhing in agony, vomiting, fainting. Then there’s unexpected quirks. One morning, I woke up and couldn’t see anything but a white mist. I thought I’d gone blind. It cleared up a few hours later and do you know what I did? I went to work, said nothing about it and stayed late. Why? Because we live in a competitive environment where we all know how disposable we are. This is a snapshot of the reality of what millions of people with chronic pain (whichever diagnosis) deal with. Underestimating it means we systematically fail to tap into what could be a huge amount of learning around resilience.

The internet is full of “10 things to say to your friend living with X condition.” As well-intentioned as that is, to my mind, it’s a plaster on a gaping wound. What we need is far more intrusive, far bigger, deeper and braver.  

So why am I writing this? First, I need to answer the question why am I afraid to write this? I’m afraid to write this because I’m ashamed. Ashamed that my body fails me. Ashamed that I have to let people down. Ashamed it’s certainly not glamorous. Ashamed it isn’t time-limited, and in present medical conditions, I won’t get better. Ashamed that I forget things I should have remembered. Ashamed that it might make others uncomfortable. Ashamed that I can’t be the same person I may once have been. And most of all, ashamed that I’m ashamed. It’s exactly the last point that has fueled writing this because it has led to the following realization.

There’s a sickness in our society that’s far more pervasive and damaging than any condition. That sickness is our profound intolerance of “imperfection.” Every day, people all over the world wake up in pain. They wake up knowing this is the best it’s ever going to be, and they await a cure. They’re brave because they get up anyway, they’re brave because they live anyway, they’re brave because they love anyway. And what do we do? Give them a pat on the head and hope someone takes care of them. Or worse still, appoint ourselves as judge. “She was all right the other day” or “he didn’t look bad to me.” It’s the latter mentality that has flourished in austerity, where we marginalize further and cut the lifelines to so many of society’s vulnerable. In this context, the word “vulnerable” has become code for “helpless.” If we peel it back, vulnerability is fundamental to our humanity. In fact, vulnerability is beautiful. Essentially, we’ve created a culture of paradox — that vulnerability is beautiful as long as it isn’t mine. Let’s be clear on this: I have a condition, and we’re all conditioned. This is more endemic even than disability. It impacts everyone.

In a culture that’s conversely both increasingly competitive and increasingly compassionate, I think we lack the skills to socialize our pain. Pain is something we go through individually. Yet, it’s the essence of our human experience. We all have vulnerability. We all carry something in our lives that causes us pain. Mine manifests physically, that’s the central distinction. If we could get to a point where we started to approach not just disability and mental distress, but humanity, in this way, we might be one step closer to equality. There’s a long road ahead. We could fill it with hope.

Originally published: September 16, 2016
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